viruses >:|

Since we have been home from the hospital stay with the rhinovirus, Sol has caught two more viruses -_-
It has been a long few weeks, poor kiddies. First was hand foot and mouth virus, which I never saw before until the kids got it. Poor May caught it from school and with in a few days Sol was getting a nasty fever and spots all over too. The fever hit him really hard and he looked awful! worse than when he was struggling to breathe with the cold! It was really hard to keep his fever down and his heart rate was really high and he was in pain from the bumps in his mouth, it was really terrible! His fever broke the day before we were headed to get his serial casting done for his knees. Unfortunately his bumps were too bad for them to cast, they worried an emergency would come up and we wouldnt be able to get the casts off, so the doctor didn't feel comfortable casting yet. We are now looking at november 9th to try the casting, we will see.
Pretty quickly after the hand foot mouth cleared up, another cold hit both the kids. Sol is still battling that one but he is looking much better. May still had a stuffy like nose as of yesterday but shes pretty much all better from it, now we are waiting for Sol to be 100% again. He is still needing the vent most the day but the nurse from the hospital told me that we really should keep him on it up to a week after his cold is over, that way he gets the rest and builds up his strength. I think it sounds really reasonable and at least he is doing better.

I started writing this a month ago now i guess, and since then we have had even more sicknesses along with two more admissions to the hospital. One was an overnight stay, a pretty unnecessary stay actually, but because he was throwing up and had a good fever that wouldn't go away, our madison doctors wanted him to be seen just to take some tests to make sure it wasn't something really nasty. Our local hospital wouldn't see him, even though I did make an appointment that they cancelled on me with out even telling me. . . We then had to go to madisons ER to get him looked at. It was pretty annoying, and it turned out to be a stomach bug and he literally just needed to be looked at. We learned our lesson with that one and next time we will just go to neenahs childrens hospital if it is something minor like that.
The very next weekend, although, Sol caught his sisters cold that she had over thanksgiving. It started as a runny nose but by bedtime it was in his lungs, even though we had been doing our best to clear his lungs, by 1am we could no longer support him at home. We called 911 to take us to neenahs childrens hospital to wait for madison to come get him. Last time we were at the ER in waupaca, the doctor told us there wasnt anything more she could do for him so if he took a turn they wouldnt know what to do. I figured we could save them the trouble and just go to an ER that may be a little more prepared for him, and it was a good idea. He was in rough rough shape. He had pneumonia, his left lung was full! He was breathing with basically only one lung. When Madison got there to get him, they said he was too sick to transport so they needed to do some therapies and nebs to get him more stable to travel.
Thankfully he made a fast turn around, after a very aggressive treatment day, his lung looked much better, he then needed to rebuild his strength. We were there 5 days. We really needed to go home a day earlier, May was having her dental procedure where they needed to take her to the OR and put her under sedation, we were hoping to have sol home by then so we could focus on may, but that didn't work out. That ended up being a VERY full day. After may's procedure we were then able to leave the hospital. Up at 5am and leaving the hospital by 5pm. ugh. But it was great to be home.
Thankfully Sol has been feeling better for a week or so now. I am hoping beyond all hope that he will stay healthy for the rest of the year! would be nice, but at least until we are through his birthday and christmas!
Here is hoping! 

D day

A couple days ago I had a hard day. Wait, i almost laughed loudly when i wrote that... after last week and the scare that we had with Sol, this week is a day that I had a hard day... it is kind of funny. Anyway, it wasnt because of Sol though. I have another tshirt order i am finishing up and these are hard for me because no matter how hard i try, i always end up looking at pictures of Lua when I go on that computer. This day i didnt even try to see her pictures, but i accidentally ended up seeing some old nicu pics. Oh how my heart breaks and how bad it hurts. It hurts especially bad knowing Sol had the exact same sickness lua had and now, only now two years later, did we learn what needs to be done to help them get past a bad virus. Im so glad Sol was so strong for us, but im so sad we didnt know this for her. So the pain kicks in and it hurts a lot. At that moment i didnt even realize that in a week it will be two years that she passed away. It makes sense now. I have been trying really hard to not think of the day she died, but it hits you no matter if you are trying to ignore it or not. Ive been extremely anxious lately, sad, and only today did i realize the day is right around the corner. We are suppose to go to madison on the anniversary day to get sol casted. I really didn't want to plan anything for that day. I really want to just skip this day entirely. No october 12. Lets just go from october 11 to the 13th, unfortunately it doesnt work like that. Bummer.

I have no thoughts on this day. I dont want to. A lot of people talk about the anniversary days, some only have one day their angels came and left this world and that day is the hard day. Losing a child of any age after their birth, gives you two days .  For me both days suck. Her birthday doesnt just remind me she isnt here to celebrate with,  it reminds me of how we almost lost her. Reminds me of how i was so clueless that anything was wrong. What seemed to be a perfect pregnancy, was all a lie. On her birthday i feel so naive and foolish for not knowing i wasnt bringing a healthy baby girl into this world. Yet her birthday is a day i want to think about and do something for. Although she is gone, she made it past her birthday and she deserves to be celebrated.

I have no silver lining to the day she died. It is just a bitter, painful, dark day. She should be here. She should just be here.
Im already trying to find a way to disappear on october 12, but that will be hard to do when we have to travel that day. maybe it will be good that we will be preoccupied especially so i dont go on facebook and see any memory from that day. I feel bad that i dont want to acknowledge this day for her, but i think it just comes down to the fact i think she should be here. That we should have done more, i should have known she was struggling and something should have been done.
I know there is nothing that can be done now, of course, but i think it is just a process on learning to beat the guilt.

home again

Last week Friday we were able to take Sol home from the hospital. We had a week long stay, which is way less than I expected for us to have. On Monday, after we got out of the picu, pediatric intensive care unit, Sols main doctor happened to be on the floor we were at so she popped in to see us. She looked at him for about 2 seconds and told me this isn't aspiration this is a virus. She told RTs what they need to do to help him have better nights, the problem they were having was giving him oxygen and not enough support from the vent. His lungs were collapsed so giving him all the oxygen in the world wasnt going to help open up his lungs, he needed more pressure to pop the lungs open. She gave us a new plan of action and they did that over night the first night in the step down unit. He did much better, he still had some plugging issues around 2 am but they were able to get it out and it wasn't as dramatic as his first few plug issues.

The doctor was right, too, his virus panel came back and he had the rhino virus... the common cold. For a baby that isnt common it can become so deadly! 

But, with the new plan in action, Sol was able to start recovering pretty quickly and after one good night of no plugs, they were ready to send us home. The home plan has been to keep him on his extra sick vent settings until Monday this week and start to go back to his norm after that. We are pretty much there now. He is off his sick vent settings and tolerating being off the vent during the day again. Although I think he is starting the teething process again now though, or something, because he isn't as chipper as he was a couple days ago.

As much as I hated going to the hospital because of being scared he was going to die, he made some huge accomplishments while we were there. We were able to hear him giggle! And see him Laugh, most adorable thing in the world. He was babbling A lot while being on the vent and our speech therapist agreed that he is prime and ready to start talking and he should be worked with a lot because he could really start booming now. He also learned how to give kisses when you ask him. He started doing a lot of things with his mouth. These are amazing things to us because we always wonder what will happen to his learning ability when he cant move like a normal baby. He is showing to find his own ways of learning and keeping up with all the other babies his age the best he can. He is really an amazing little guy. He beat this sickness, really showing us how strong he is. I don't think this will make it any easier for the next time he gets sick, which I'm hoping doesn't happen for a very long time, but hopefully if we stick to the plan of action we did this time, he will recover just as nicely.

Long road ahead.

Thursday seemed like a very typical day. We did our typical things that we have been doing with out our nurse during the day. We had a typical evening. Bath time and bed time all seemed normal. When we went to bed i noticed sols oxygen levels low, 93, which isnt like him so i knew we needed to do coughs and suction. After doing those things he dropped his oxygen even more and it took a nebulizer treatment, many more coughs, and suctioning to get him back up. I called our hospital once this started happening. We had no inclination that he was sick, at that time no fever, cough, or runny nose. But i listened to his lungs and they were not good. The doctor at madison said we could go to the hospital now or wait and see what he will do, he guessed it was a type of aspiration pneumonia. We were both exhausted, both kids hadnt slept really long, i wanted to go to the hospital right away but i was also working on very little sleep so i knew i wasnt going to make the drive. Sol was now staying at 96 oxygen so we decided we could take shifts to see if we could clear this up at home. 2 am came and i went to check on him. He was 93 so i figured id do some coughs. When i took his vent off, though, he wasnt able to breathe at all. We had to do coughs immediately and he was not looking good.
I had already been paranoid and nervous after going to try to sleep and i guess that should have been a clue there that we should have gone to the hospital. I ended up getting sick to my stomach and letting thiago stabilize sol. But it wasnt working. He wasnt able to breathe and needed oxygen. When i talked to the madison pulmonary doctor we made arrangements that if we needed to go to the hospital we would call for an ambulance to transfer us to the nearest childrens hospital and madison would pick us up then and transport him to madison by ambulance. At that point that is what i did. I called 911, told them we needed to go to neenah. The ambulance driver didnt feel sol was stable enough to go to neenah so he took him to our local hospital ER.
It wasnt much help being there. The er doctor didnt really know what to do with him. She ended up asking me, if he gets worse what else do you want us to do because this is pretty much all we can do. You would be better off being at neenah. I knew that which is why i wanted to go there but at this point he was getting oxygen and we were keeping him stable ourselves. I didnt want to keep moving him in and out of these hospitals so we decided to have madison pick us up in waupaca and the pulmonary doctor told them what needed to be done.
At that point may was getting scared, me too, sol was managing so may and i went home to sleep a little before going to madison. Sol arrived at madison around 9:30 friday morning and was put in the pediatric intensive care unit. Xrays were consistent with aspiration pneumonia but i did notice he had a runny nose at the ER. He was treated right away and his day seemed to go ok. His night did not go ok. Around 1am he had low oxygen rates and everything they did didnt bring them up. He was put on 100% oxygen, his trach was changed, he was put on a hospital ventilator but nothing worked. The resident or doctor that was there tried turning down the oxygen and he could tell that it didnt help any so he assumed he had a plug in his lung. They started bagging him with an ambu bag and eventually that broke up his plug and he started to do better. His morning xray did not look good. His left lung had a lot of little collapses going on and his lungs sounded junky. We started doing neb treatments and chest pt on him every two hours to try to clear that up.
The next xray has shown to be better but night time continues to be rough for him. After talking with his pulmonary doctor yesterday she said she thinks it is a virus not an aspiration pneumonia but what needs to be done is to open up his lungs with more support from his ventilator not oxygen. We have gone her route and he did have a better night last night. He did have another plug early in the morning but they were able to get it out.  Today he has seemed to be pretty congested and working hard to break up all the junk in his lungs but he is in good spirits.
We have a long road for recovery here, probably at least a week hospital stay, maybe more, but as long as he improves to be able to come home. I wasnt so sure we would be bringing him home with us, and in still worried he will throw some trick at us but he is working hard to do his best to get better so i appreciate that little mr.

confessions of a trach mom.

It has been a hard last couple of days. I felt very close to having a huge break down on one of the days and trying to find a way to "not do this" anymore. It has been a perfect storm that has been circulating above for awhile and everything came together to unleash. First the no nurse for two weeks, problems with the nursing agency, no other nurse available to even come help, the overwhelmingness of how difficult everything can be, all the medical supplies that came with no time to put them away, and top it off since Monday Sol has needed suctioning every 2 seconds, and that isnt being sarcastic, some times i would finish suctioning and have to start before the suction-er could be turned off! Suctioning constantly drives me mad. Literally drives me insane, the constant noise of the suction-er and having to go at it again and again, it breaks me. I start to wonder if he is getting worse, deteriorating, or what the cause of it could be. Will we have to suction like this forever?? It drives me crazy. Luckily Sol doesn't complain too much about it like Lua did. If she got into suctioning fits she would start crying which made it worse, he doesnt get too mad over it, just me. Then I find myself wanting to not do this anymore. Because I can't. Day after day with no real progress in sight, when you think he is getting stronger and better and you are hoping for great progress one day, and then days like this week where all you do is sit and suction, doing coughs wont work, can't eat anything, cant even go pee, sit and suction. Can't go on.

But then, some moment, I thought of Lua. I remember I said, after she passed, I didn't care if all I did 24/7 was suction, I would do it to have her back. It would be the same for Sol. I should be happy to be suctioning him because that means I still have him. He is actually being able to cough some of the secretions out of his trach, I don't think he has much choice because he has so many of them! But at least he is helping out. And we press on, because we have to, because I absolutely love him, and although I get frustrated and upset I would always do everything for him. I hope all parents have mini breakdowns now and then and it isn't just me.
Eventually we found different positions that stopped all the suctioning, we found certain things that entertained him long enough to be distracted so I could get the supplies put away, we got in a good nap, and he gave me funny faces when he woke up. Then May woke up with a runny nose and sneezing, so maybe this is his cold--- and hopefully wont get anything besides this---- -_- and then we keep moving forward, because we have to. Maybe what that nurse said to me about 'just fix him' hit me hard enough to feel bad that I'm not trying enough things to find an answer to help him out. I've spent a lot of time looking online to find any information on fixing skeletal muscle, maybe one day I will come across something. But until then we will just do the best we can. Some days are really grim and difficult, but I know how the days would be with out him and I would tolerate that a whole lot worse than days of constant suctioning. But don't get me wrong, suctioning all the time is a real huge pain! 

oh boy.

Oh boy, oh boy... This week has started off, well just started off. My hardest struggle with having all of Sols conditions is the fact that it is really needed to have an extra set of hands, nursing. Home nursing is very difficult. With Lua I went through three nurses and I didn't truly like any of them, none of them were good with her and the agency was awful to me. So I left nursing behind when we had Lua. This time we have had two really good nurses, one nurse was someone who only came in for a couple hours, and then we have our regular nurse that pulls more hours. The agency has gone through a lot of changes and making a lot of things difficult for a lot of the workers there. This results in me being with out nursing. I can do a lot of things on my own, I usually do, but right after we get into a good routine something has to get messy to make life even harder. I guess I just got spoiled with having the extra help. I so badly wish I could just do more with Sol, if only he required less suctioning that could make things so much easier. But we have to do what we have to do because we get no other choice. It is only Tuesday, unfortunately, yet the show must go on.

Ugh, ugh ugh... 
But since the show must go on, we started monday off with taking May to the dentist to get a second opinion on what to do with her cavities. She did spectacular at the dentist too! This has always been hard for us, she has thrown many fits, one dental hygienist told me she needs to learn how to behave appropriately at the dentist, when she was three, because she cried while they tried to look in her mouth. We kept trying to tell them that if I go back with her she will do fine, but at first impressions they don't allow that so they end up with May crying and not letting them take a look. Now we are so far behind in treating her problem teeth that we have to go to the O/R to take care of all the teeth. It is so frustrating, and I'm not saying we arent at fault for not brushing better, but they spent three visits of her crying and not looking at her teeth! Yet at our appointment yesterday they let me go in with her and she didn't cry, she opened wide, and let them get everything done that needed to be done. Shocker. I'm not sure when things took a turn where doctors feel like parents don't know what is best for their own children.

I suppose I shouldn't go on, little sleep and lots of frustrations means bad words coming out and bad opinions.

Here is to friday! 

just fix him.

We have had the week this week, and it isn't over yet. Our regular nurse had something come up so we have been on out own since last Thursday. Isn't a huge deal because I've done it before, it just gets a little tricky with picking may up from school. It is nice to have an extra hand for that, but it isn't impossible for me to take sol to go get her. I say that but i only went to get her once this week.. So it is kind of a chore. Id hate to send her on the bus this year, mostly because we are so close to the school and thiagos job is literally right next to her school, but maybe next year we will have to consider the bus. Anyway.... Sol and i went to get her on Wednesday. He did 'fine' but the stares i get is ridiculous. You never feel so low in your life than when you are in a room full of a ton of parents sending you pity because you have a child with so much extra needs. Then there happened to be a lady who had a baby the exact same age as sol and she came running over to look at him, to compare, and it went from "oh look at this little cutie" to "oh my will he survive" super quickly.

I know many people would say that i don't have a problem being open about sols condition... But it just bothers me to be trying to do something normal and everyone making it seem so abnormal. I don't know how i want people to react but i don't want pity. 

Nothing makes you feel more abnormal than having a fill in nurse constantly remind you how not normal your situation is. As if my week wasn't different enough, i had to have this fill in nurse basically ask me, well why dont you just fix him. Just fix him. Whoa! Why didn't i think of that!??? There we go of course ill just fix him. That makes sense. Well because you know there was this girl who was born with no bones and doctors overseas were able to find the problem and give her the missing component and she started growing bones! Surly if they did it for bones they can fix muscle. I wish i could tell that to the other hundreds of parents with kids with muscle conditions and tell them all they need to do is fix their child and go overseas. There are so many problems with this. First i had to remind her what an undiagnosed condition meant... And also i need to see if that story is even real. And lastly if i was a millionaire i bet we could find a genetic doctor to find the problem and fix it. But with out money, with out awareness, a cure is far away. Besides that, i daily am trying to find something i can do to help and im so glad it took two people this week to break me. First, the lady with the healthy, normal baby, exactly sols age making me feel like there will never be a time we could go out with Sol and just have it be normal, and the nurse who is very ignorant to muscle conditions, spewing her mouth. It is my fault too because I asked to have a back up nurse be trained and I should have known... should. have. known. To be fair she actually doesnt have a lot of experience and is not an RN so Im not even sure why they sent her, I guess so she could see something new and rare or something like that. She told me how the other kiddo she watches is going to get his trach out soon and then the family can go back to a normal life. Sometimes we have new normal, but ignorant people will never see that. Black and white that is it.
I was really upset after the nurse left and when I started this post, I couldn't shake it off. But now after a sleep and playing with Sol on the floor, I remember how it doesn't matter. I can ask to not have the nurse back, but it sucks that it is so difficult to find good nursing help. Her opinion simply doesn't matter. I've been too spoiled to meet so many people that are more understanding of the situation and take the time to listen and try to understand the situation instead of just throwing out all their opinions with out knowing a single thing about the situation.

The show must go on though.
But you should have heard the conversation I had with her explaining how it isnt just that easy to "fix" it... I did get her to shut up for a few seconds at least.   

goodbye August.

We have had some busy weeks lately. After we all beat that stomach bug, summer school started and when it ended it left us with another bug floating around. First May, than of course Sol caught it, then even daddy. I was the last to get it, when I thought I would miss out all together but no luck. It has taken Sol the longest to get over it, a 2 day cold bug for May lasted at least a good week for Sol. But this is progress, his first cold took him a month to beat. His stomach bug took 11 days and a hospitalization. So a week-ish, isn't bad. His main symptoms went away around day 5 or day 6 but he continues to have a large amount of secretions and drool and aspirating all of that daily so I am needing to do coughs with him almost hourly or more. He has recovered though and that is what is important. He was suppose to get his shots a couple weeks ago but we pushed those back like three times so today we finally got to them. He is only months behind on all his shots... what are you going to do though if he is always getting sick, ugh... it is going to be a long winter. I probably shouldn't even say that, I said the same thing in my caringbridge site that I had for Lua when she got her first sickness and she never recovered from it, so yes it was a very long winter. :( I'm hoping for a much better winter this time around, but you never ever know.
Speaking of shots... I have been very lucky to be surrounded with doctors and nurses that are very good at listening to me and my concerns, I mean I've had the normal stuff come up while in the nicu about the feeding and gaining weight issues, but I've learned to pick my battles.... Today reminded me, though, how difficult it can be sometimes to advocate for your child. Every parent has to do it, healthy or not, but it is frustrating. sometimes i wish medical staff could put aside the normal go-to routine of things and just listen to the parent. I had a nurse today that i dont think she knows what a muscle disease is.... she kept talking like she knew everything but she wasn't listening to a word of what I was saying and trying to explain to her... This situation isn't a big deal at all really.. It was just the fact that I was reminded that it is difficult sometimes to advocate for your child. It was suppose to be a really easy, fast, simple appointment, but I will always have to explain how Sol is, always. Some days i'd like to not. Or at least say what needs to be said and the person understand instead of telling me what they do for normal kids. I guess it is hard to understand unless being in the situation, but it just annoyed me today. 

Sol will also start casting for his knees at the end of this month. This is such a bitter sweet situation because I'm very excited to see the results from it, yet at the same time it is going to be a pain and he will be uncomfortable and wont get to do a lot of the things he likes, like bath time and certain positions. But we will just have to push through and hope that at the end of the casting he will have more movement in his legs and once they are straight we can start trying out standers for him to do some weight bearing on those leggies of his. A very bitter sweet situation, I just hope we don't end up regretting doing this, by putting him through this if it doesnt work or if he gets too sick or anything like that. One cast at a time. Maybe he will do some more sleeping to catch up on all the naps he ISNT taking anymore... I wasnt aware 8 month olds stopped taking naps already -_- .

Now the biggest problem I am facing is actually with May and the stupid dentist... I am still surprised that they are so into putting kids under to fix teeth, I can't decide if this is a good thing or a bad thing to do. I can't read if it is my ignorance about the issue, or if it really is unnecessary.. ugh and there really isn't a lot of information on the topic, so much going on! Now school being started and then casting starting, A lot to take in.
Facebok does those memories daily, it is where I get my daily dose of Lua. I use to look at her pictures daily, watch her videos daily, but I find now that it is too hard to do it. I have to go awhile with out looking at them and when I do look at them it is really too difficult... I don't know why that is, I know I am disappointed that we didn't take the same route with her as we took with Sol. I can't even figure out why we couldn't have been directed to go the same route... there just becomes too many questions and I have to stop myself. I wish I could still surround myself with her things and her videos and pictures but if I do sometimes I worry my heart will actually break apart. So I stay distracted, it isn't too hard with everything going on. 

Little lives

I've made the switch to the iPhone... The doctors were having a hard time hearing me so I needed to update my phone and finally decided to go with the iPhone after resisting all these years. But now I don't know why I resisted. It is amazing to use a phone that actually opens up apps! Compared to my windows phone that was pretty outdated and nothing really supported it. Oh well. Anyway..
This week my heart was shattered again hearing about the sweetest little boy who passed away. Little Logan, if you are on my Facebook you have seen some things about him. He had such the sweetest little soul, if I could meet anyone in the world it would be him. He is one of those babies that makes you feel blessed just to know his name. Amazing baby. He has had one thing after another thrown at him since he was born, yet he took it all with a huge smile on his face. This little boy was sure loved too. He radiated love in all his pictures, just the most precious thing ever. My heart hurts so much for his mommy and daddy, they poured their lives into him and gave him so much. I remember after losing lua how blah life became. There is so much that goes into having a special needs child, it becomes hard to know what to do with yourself when they are gone. It is eerie to not have all the machines. It is extra dark with out their equipment shining at night. It is lonely, and it just overall hurts. Now this precious family has to take all of this in. It is hard. Genetics suck. It is so hard to comprehend that one tiny little gene change can cause all of these crazy issues to happen to our babies. 
I look at sol and how much he has improved since birth, yet he is still no where near being able to move like a normal baby. I still wonder what happened that could cause this much damage to him, I'll always wonder that, but I know it doesn't matter. What matters is to keep moving forward and enjoy every day, every moment, because some day maybe there won't be another day. I know that all too well and seeing what this family went through and seeing another baby lose his life, is a huge reminder. 
Tonight I think we will light some lanterns and send them off in memory of Logan, lua, and all those gone too soon. Wishing for a day where babies don't have to be affected by such diseases.

just living

This morning when I woke up I was thinking how badly I wish Sol could be hitting milestones every other baby his age are hitting. It hurts a lot reading those updates on how old your child is and what they should be doing and knowing your baby is far behind on those things. For a moment I thought to myself, man I wish he was normal.
This seems obvious right? Everyone wishes the same thing, that he was a normal baby, of course I wished he didn't have this medical condition as I have said many times, but I don't think I ever stopped and thought those exact words, I wish he was 'normal'. I almost instantly regretted it. No one is 100% normal, even those who think they are, what is normal right? We still work towards milestones every day, we are just very far behind. Although, almost as soon as I thought that we had an incident that made me realize I don't wish he was normal, what I wish is that i didn't have to worry about him passing away at any second. Being normal makes it seem a lot less likely that a child will pass away even if that isn't a promise, it is easier. Sol having the condition he has means he wont live as long as those normal people. I know I've said this before but just reminding.
Sol had a rough night, something has been bothering him so he slept in this morning for a change. After he woke up I brought him to the living room to start our day. Summer school is going on this week so Sol and I get a little cuddle time in the mornings before the nurse gets in and im off getting things done. But Sol had different plans this morning. As I was changing his diaper he started crying really hard for a few seconds, after that his heart rate dropped to 90, which isn't very normal of him, but his lips turned a blue color. He recovered in seconds but I instantly worried if he was going to stay recovered or go down hill from this. I called my husband to come home and Sol seemed to be doing better, I did end up bagging him just to see if that would help the color come back along with suctioning and doing some coughs on him. He was fine until Thiago got home and pretty shortly after he walked in the door he did another little episode, a hard cry, dip in heart rate, blueish lips. Seconds he recovered again but what was going on?! We called the doctors and also had a visit already scheduled with his family doctor anyway. After telling madison what happened they seemed to believe he had a plug in his trach and wanted us to change out the trach and what not to see if that helped. I'm really doubtful it was a plug in the trach, it seems like something else was going on. Regardless, we made the changes they recommended, but he didn't have any more episodes the rest of today so far, even before any changes were made. He has still been throwing up, so his family doctor wonders if he was retching during this episode and that is what caused everything. Who knows, but we ended up doing an xray just to rule out lung issues, and the xray came back looking good.
As quickly as I wished for normal, I wish for just living. I really don't like having days like today to remind me to just be happy with what we have because I know any day things could change and most likely it won't be for the better.  

stomach flu

Sol has been sick with a stomach bug for a week today... Uhhh I wish so badly he would be over this now. We can't move him too much because he throws up easily right now. The poor guy gets stuck laying around a lot now because of how quickly he throws up. A week. A full week he has been throwing up and not able to be moved too much, it is hard to watch. We can't work on anything and we can hardly hold him, so very very hard. He went on a continuous feed at the hospital and we have continued doing that. At some points he acts like he is feeling so good and then just as quickly, he gets so sick. I really thought he would be doing better by now but it really hasn't happened yet. Everyone keeps saying it will just take him long because of his condition and being a baby, it is just hard to see him be sick for so long.
Sometimes I can't believe there are people out there that dont have to worry about slight colds or stomach bugs could take their childs life. I don't even remember how it was to live like that knowing the smallest thing wouldn't take my child from me. Or the fact that most parents go about their days never thinking their baby wont live to see age 5, 10, or 20... It literally blows my mind. I know we have that with may, but then again knowing what we know now and losing lua, I know we have no guarantees that any of us will make it to tomorrow, but some people live in such innocent bliss that nothing bad could ever happen to their child or themselves. I wish I had that feeling. I wish I didn't have to fear that I may have to plan another funeral for my child for the second time, and in reality I know someday I will. Dwelling on that fact can drive me crazy with anxiety and depression so I try not to think about it, but when he gets sick it is hard for me to ignore. I know he is a strong little mister, but I also know how weak he can be because of his condition so I know how fast things could turn on us. So many people at the hospital asked us how we were doing at home and I never went onto detail, we are doing so that's good enough. I'd hate to say good and tomorrow have him stop breathing, so for everyone's sake I just tell people we are doing. I want to be doing great. I want to be able to say that. I want to be able to watch sol try to crawl and babble so bad. I wish I could just inject him with all of my muscle, he wouldn't even need all of it just enough to hold his head , walk and breathe well enough. It gets so frustrating, as most of you can tell. And sick days take a toll on me. It becomes many days of being worried and lack of sleep and still trying to keep things normal for may. So much. I follow some babies who have progressive diseases so the parents are aware each day is a gift, and it really blows my mind how so few parents actually live like this. I just can't get over it sometimes. Oh well.
It was good to see the hospital crew again, we were able to get sols stroller and order a neck collar for him to help him hold his head up on his own. That could take just a few weeks to get, as long as sol has stopped throwing up by then... I dont know we will see I suppose.

most parents wouldn't get excited about a neck collar so their child could finally hold their head up on their own.....oh the joys.

5 year old

Today May is 5 years old!!! It is unbelievable how fast time goes and that she can already be 5!! It is super depressing.. Do all parents feel like this as their kids age? I guess another reason to not have anymore kids! Having her was a completely different experience than lua and sol, obviously. She made me a mom and every day she is still teaching me how to be a mom. I can't even express how badly I wish i could have had the same experiences with lua and sol that I did with may. We had challenges but watching this little baby grow and learn the way she has, has been amazing. I miss her baby days soooooo much. I know I wrote before about how seeing other babies and families with babies bum me out, but really looking back at Mays baby pictures and videos, make me the most depressed. How much fun we had with May as a baby was a great selling point in having another child even though we were really on the fence about it. I miss those days. But have to look forward and not at the past I suppose and hope for another amazing 5+ years with her.
We are currently still in the hospital with sol and his stomach bug and may is at the grandparents house. I had planned to take her to the mall and do play and shopping today, but plans change :( I'm really sad I'm not with her right now to give her a great day, but she will probably have more fun with grandma anyway. We have a party planned on Saturday for miss may, and I'm hoping so badly we will still be able to do it. I hope we will be able to get out of here today, but who knows what will happen.
happy birthday may! My first baby! I love you my little 5 year old!

speaking valve

Friday we had some appointments in Madison. We were suppose to see urology and pulmonary. We only made it to our pulmonary one unfortunately, although I'm not sad about because that is the more important one. Sol needed to just be checked over to see how growth and everything is going for him. They made no changes at all. No feed changes, no equipment changes, everything is going overall well for him so we had no need to change anything. Yay! Also he is doing well overall so we dont need to do another pulmonary appointment until 2 months from now instead of every month. Yay!

but the big thing at his appointment was having a speech therapist come take a look at him and decide if he would he able to try the speaking valve. She didn't even really look at him she just brought the valve and they decided to just try it. I was terrrrrified. They told us lua was always way to weak to try it, I doubt that now, she seemed to be a little stronger breather than sol is so now I'm guessing she would have been able to try the valve as well. Anyway, we also had a different speech therapist look ag him and she didn't feel like he would be able to do the valve yet. So I was nervous!! The way the valve works is you breathe the air in normally but it doesn't allow air to come out the trach, it pushes it up through the mouth. It is more work to do this.
But they felt it was fine to try it. He was on his pulse ox to watch his oxygen and heart rate and had him in his best position for him to push out saliva. He cant have a ton of saliva in his throat other wise he can't move the air out of his mouth easily. They popped it on and he started working hard and trying to figure out how to exhale, but in just a few seconds he figured it out and started talking! He looooved it! He smiled and looked so proud that he could hear his own voice. I kept asking if we should take it off, because he did have to breathe differently and a little harder, but they said no just leave him because he was sitting at 100% for his oxygen and normal heart rate. So we let him go for awhile and he babbled away!
since he passed the test we were able to take the valve home with us and we are allowed to try it 2x a day for 5 mins. Then next week if we have had no issues we can do 3x a day and keep moving up as long as he is tolerating. It is amazing and so exciting!
we used it last night when we got home and he did amazing again! It blows me away. This morning we did it and he wasn't 100% happy with it. It took him a little longer to figure it out but at the end of 5mins he wasn't very happy... If he is getting sleepy this valve is too hard for him I think. So we will keep working on it and see where we go from here. It is extremely exciting. He has less secretions while on it because he is pushing the saliva out instead of down so we dont end up suctioning him a lot when he is using it. We feel almost like we are hitting normal baby life! Like there is such a thing! But you can't imagine how great it is to hear your baby's voice! We even heard a giggle last night. We hear him when he is on the vent but this is him doing it all on his own. Just amazing. You really thank technology for how far we have come to give us a device like this that a baby can use so baby and parents can hear them. Just amazing!

one persons thunderstorm is another persons rainbow.

If you don't follow articles on the mighty, I highly recommend it. They typically have something that covers for everyone, because face it, we have all been through something. Today I read an article about suicidal thoughts, not wanting to die but just not wanting to exist, and I thought it was a really good read. Here is the link. 

http://themighty.com/2016/07/suicidal-thoughts-but-not-suicidal/?utm_source=Facebook&utm_medium=Mighty_Page&utm_campaign=MENTALHEALTH

But at the end, I read the comments from other people, like I always do, and I read someone who said they feel exactly like this. They have two young kids and some days they just don't want to disappear and go to an island and be alone. It is funny, I know what the chick means and how she feels. I remember feeling overwhelmed some days with just May! It is funny now, though, because that persons nightmare is my dream! Their thunderstorm is my rainbow. What I wouldn't give to have two young perfectly healthy kids that are overwhelming me. I only know that this would be amazing because I have like one of the worst options in the world. But I feel like this statement holds true.. my thunderstorm is probably someone else's rainbow. I don't know who, but it could be. Maybe someone who can't get pregnant at all would love to have a medically fragile child after losing one child. I don't know... 

Sol had his first sleep over at grandma and grandpa's house last weekend. It was my 10 year high school reunion - old - and then my great uncles 90th birthday party the next day, so we figured it would be easier to go for over night. Sol did well, but we had some heater problems with his vent. He didn't seem to care though. He did okay at the birthday party, he needed a little more suctioning than I would have liked but... BUT! He got his first tooth over the weekend!!! So the suctioning was understandable. He cut the other tooth by tuesday, so the kid has been busy getting these teeth out! He now has two bottom teeth, and it seems he is working hard to get the top teeth out as well. He has been so very cranky ever since the second tooth popped out. We will see what the weekend holds for teething.

We had a few therapy appointments this week, we tried to go to speech therapy twice but we just went on the wrong day.. oops. I am currently not a fan of our out patient speech therapist, nothing compares to what we were getting in the hospital, but it is seeming like yet again we are getting therapist who feel like since there is so much work that needs to be done with him that maaaayyybe it is just too much to do. We were asked what our goals were and if we were making sure to be doing things for his quality of life vs our quality of life, because you know, he doesn't know that he is being tube fed. One that is a lie he does know it because he loves when you put food in his mouth, and second of course everything we do is to make life better for him. I was really upset that she said this because to me it sounded like "im really lazy and I don't want to work with someone that i dont think ill get results from"
I dislike this so much. But we will see what happens, either we move forward or he goes backwards and then we will just quit.

Sol goes for some more appointments the end of this month and then we will be setting up a time to start his casting. Busy end to this month, and I think August will be pretty busy as well!    

the mommy hood.

Mommy hood. Oh mommy hood. There are so many things that make this difficult, healthy kid or not. From my experience one of the most difficult things that make being a mom so difficult is, other moms. As much as I believe in having mommy friends for support, they can also make it very hard. Everyone does things differently and there are some people out there that know their way is the best and only way to do things. We know that isn't true, but I don't know what it is that makes mothers feel the need to out do each other. Be "better" than the other person. That may be... you think formula is better than breastmilk, cloth diapers vs disposable, vaccines vs no vaccines... I don't need to go on, those of us in the mommy hood know what the hot topics are and we all have our opinions. I've had my opinions too, and although I know I've had my share of judgmental moments, I would like to think I have tried to do my best to not force my opinions down someones throat and make them feel like they are less than me because they don't do it the way I do. This is something that has become painful to me after having Lua and Sol...

I don't know why as parents we find the need to try to out do each other. I think because having kids it becomes your next chance, if they do great than that reflects on how well you did as a parent, so we start making competitions. I felt this pressure a lot with May, everyone who had a baby May's age, it seemed like a constant battle.. Well my kid started crawling at 5 months! My kid was rolling over by 2 weeks! My kid was potty trained by 12 months! Or the one I heard the most, My baby started walking at 7! no 6! Months!! (a stranger actually told me that one....yeah..) Maybe it is more of a first parent type thing, or I really wouldn't know because things have been so different for me compared to most parents with second and third child. I just don't know why we do it. A healthy kid will eventually crawl, walk, talk, get out of diapers.. why are we in such a rush to make them grow up?

Regardless, it has come to my attention that sometimes I am out of line for blocking people on facebook (i know this because people have been telling me this and asking why they get deleted, very distant relatives i have never met have come up to me and asked why I won't add them on facebook... uhhm..). I don't think I really need to explain myself, but then I think, maybe just maybe some day someone else will find themselves in my situation and think, 'man if only someone would have written it out for me that I could explain to people how I feel.'
Then this will be well worth it, although it is a long shot because if someone finds themselves in my situation they probably won't care at all to make it a point to explain anything to anyone else, but put all their attention on making it through each day! But here I am wanting to explain myself anyway.

So, to my mommy friends support group, 

Please do not take offense if I have deleted or blocked you from facebook, I know we have heard the term it isn't you it is me, but in this case it really is. I take the time now to be a little more selfish than maybe I should be and that is why you may find that I can't be friends with you right now. I have had a hard time dealing with my grief, and after I lost Lua I actually left a mommy support group that I was on for many months so that my negativity and only wanting to post depressing posts wouldn't affect all those in the group. One day I had found that someone re-added me to the group and since I was recently pregnant with Sol I decided to stay, but constantly seeing many others having healthy pregnancy after healthy pregnancy made it really difficult for me to stay happy and all I wanted to do was say things that I knew I would regret, and sometimes I did it anyway. So for me to be able to stay in the group and not feel like wanting to put a knife through my eye, I had to eliminate the things that caused me the most pain. Unfortunately, sometimes that meant people who were/are currently pregnant. It is so hard for me to see healthy baby after healthy baby and I try to be so happy for everyone as much as I can, but sometimes it just wears me out, wears me down. I'm a very broken person at the time-being and I hope one day these things will be easier for me to handle. I know some are thinking just leave the group, well I tried once and besides I do have one healthy child and sometimes I have questions for the group about that. You are also probably thinking, just turn off the notifications for the page, I have done that. Turn off notifications of the people you don't want to see so much of, I have done that and things still show up. So I have tried other things, and sometimes I get to curious as to what everyone else is up to in life and go 'facebook stalking' and i only end up super upset, I know myself and I know the only way to help myself is to take away the option to do that completely. It is almost a great compliment if we are no longer friends on facebook, because that means I think your life is going so great I wish I could be in the same situation! Jealousy is a hard thing to deal with sometimes.
So again, please don't be offended, although I know some still will, I honestly really need to do what is best for me though. I would leave facebook completely so I dont need to deal with any of this, but facebook is the only way Thiagos family can see our family. If you would like to know what you can do, please just be patient and understanding, it is all I ask.

Thank you.

no place.

I never have the time to sit and think of a subject I want to write about, when I do start in a rant, I either have sol needing something or may. In the end I just go with not writing anything so I dont end up writing something I shouldn't have or something I haven't thought through. But I've been really down lately and thought getting something out would be nice.

I dont like when I feel down and have no specific reason for it to pin point the problem and try to fix it. I think I'm just tired of seeing everyone's happy lives while every day is a struggle for us to get through. The problem, facebook. I really hate it. I also hate feeling trapped. It is so hard to go out and do anything with sol and that is so unfair. Everyone can go do anything they want with their babies, but we have to split up if we want to go out, family outings dont happen often. Funny though if we had a healthy baby we probably wouldn't want to take them out to things anyways, but the fact of knowing how hard it is makes me so mad. Or maybe I'm down lately because in a few weeks sol will be the same age lua was when she passed away. I hate that I was an incompetent mother for her and couldn't help her more. I mostly hate that I have the worlds worst genes that causes this to happen to babies and there is nothing I can do about it. So very unfair. I know complaining won't help my situation, it will probably just make it worse in the end, but some days I'm just so sad.
I  feel like there is no place for me anywhere. All the support groups im in either their kids are so much better than sol and I dont get much from them, or they have a progressive disease and are declining in health which I can't exactly relate to, this is the problem of not having a diagnosis, I can't find the right group for support. When friends or family talk about kids they really only ask how may acted as a baby, because the other two kids I had dont count?!! Apparently not. I've never talked to someone who cared about luas sleeping habits or how sol sucks on a nuk, if you aren't something that everyone else is then no one relates to you and you get pushed aside in life. And that sucks. They say all life matters, what actually people mean to say is all life matters that is just like me. Maybe that is harsh, but come on... Really.. People only know what they can relate to, if you have never lived an experience how are you expected to know how it feels? I think that's a big part in why some people don't like the black lives matter. If you have never been harassed by the cops before then you cant even relate to how that feels. My husband has been harassed by cops in Brazil just because of his skin color. So although I never lived it, I've heard his experience and I can understand how scary that can be and the fact that it happens. Of course all lives matter, but not all lives are treated the same! As sol gets older, how easy of a life can you imagine he will have... Maybe there will be a few kids that treat him well but the majority of people will not treat him like everyone else because he isn't exactly like you and me. He isn't treated like a normal already, and no one cares. I just see how people are so happy it isn't them, it isn't their baby, isn't their family.
Which is why I say there is no place for me. I only receive pity, sympathy, or condescending people call me such a strong mother. It is all crap. I can tell it is said because they are so glad this never happened to them. My grandma, bless her heart, said that to me when we found out sol was affected... She said, I never had any of those issues with my children and I'm so glad I never had to deal with something like that. As harsh as it sounds and at the time I really didn't enjoy hearing that, it is truth and honest and I thank her for that. For not giving me some crap line as to, oh this is Gods will, everything has a reason, or some stupid untrue line like that. What you should say is, sometimes bad things happen to people that we don't know why and it sucks. Just be honest.

anyway, I seemed to have covered a bit during this post, so I shall put this thing to rest. Funny that when I started I didn't have much to say...

then and now.

Sol has been doing well lately. He has really been making me so proud, and our hard days are not necessarily about him and his health lately. He is continuing to practice his head control, he is loving kicking on his gym, moving his fingers a little more, and yesterday he was rotating his wrists. His movements and strength is very small, but compared to none, it is huge. His breathing has been doing okay, I did suction out some blood yesterday night and I have no clue why, maybe he got too dry during the day or I don't know why. The last few days he has been making many attempts to swallow and I can certainly tell a difference since I am down to suctioning a couple times an hour compared to many times an hour. We decided to add outpatient speech therapy to our list of doctor appointments. We only had an evaluation last week but our plan is to go twice a week and we will see what happens.
There is something difficult about how well Sol does. The better he gets, the more guilt I have. The more I believe that if we would have taken the same steps with Lua, she would still be here and doing just as well as he is. I am so happy how well he is doing but it is proof that our previous hospital failed us. I believe that we are the parents to ultimately it is our responsibility and we are at fault, BUT, we are not doctors and until Lua we never knew anything about muscle conditions, how were we to know? It was only after many struggles with Lua did I look into what other help was out there. I was afraid to initially switch hospitals though. I kept telling myself that we would check out Madison as soon as things cooled down. She then got sick and thinking after she got better we would look at another hospital. I actually heard of a pulmonary doctor in New Jersey and I contacted him and we discussed a plan for Lua. Thiago and I decided that we would use the money from Lua's benefit and go to New Jersey and see this doctor. That was just a few days before she passed away. We wanted to go when she got better of course, but it was too late by then.
This is the problem with our medical system. From our point of view the hospital we were at with Lua was too proud to tell us up front that they don't know much about this condition and we should seek help from another facility, another doctor, another hospital if we wanted to provide a longer life for her. Maybe they don't see it that way, maybe they think they did do everything they could for us, but regardless if they will admit to this or not, their beliefs are not for quantity of life but quality. Which is why when a baby with SMA is born the hospital will say take them home and love them because they will pass away shortly. The reason they will pass away shortly is because this hospital doesn't want to prolong a life they believe is not worth living. This is the difference between the doctors we had then and the doctor we have now. She believes kids with SMA can have a happy prolong life. She believes in the parents and their wishes. In the end it is up to us to decide what we want for our children. I understand completely parents who do decide to take the route of giving the best life they can to their children but not prolonging it. I get it, there are many, many things to take into consideration for a parent to get to this point, and I truly get it. I also get why parents want as many years as they can get. It IS the parents choice, not the hospitals. Give us information on each decision and let  us decide.
I wish very badly that this is something the milwaukee childrens would change. Their style is old style. We talked to our current doctor a lot about this, we know that they have all the information that Madison has but they are choosing not to use it. Why? Is it because they think babies like ours aren't worth it to fight for? We were told many times with Lua how much work she would be. Oh it is going to be so much work, she is going to need so much care, do you understand how much work it will be... Allllll the time I heard this. I got so tired, so so so exhausted from hearing this. You know what... I never heard this at madison. I never had a time I went into the NICU and they told me all the bad things that could happen. I actually had doctors say how they were so impressed with him and how they love how much he was changing and improving. He made all the doctors in Madison very proud. It was Crazy!!

Well I had to stop writing this after awhile and now I can't get back into my train of thought so I suppose I will have to end this. My point to it all is milwaukee needs to change at least for the parents who want the change. 

apple tree.

Our awesome neighbor had some tree guys over, arborists I guess is the right term, and they happened to have some apple trees on discount. We got one and they planted it for us and also replanted our other tree in the yard. I love trees, a lot, so this is exciting. Not only will this tree be able to grow with Sol, but it was planted one day after our niece was born! The very next day I drug the kids out there to get their pictures taken with the tree. Sol hated this, but I was really proud of May, she held Sol all by herself! Some adults can't do this! She is a great big sister!

On another note...

Some day I would like to write a letter to parents who live in wisconsin and find out their child has a neuromuscular disease, and all the bits of information that we have found on our journey. I know some people have done this, but I believe every person's journey is different and it never hurts to get more information on situations. I think that will require me to have a long time to sit down and really think things through so it is written well and full of all the information we have learned, so that may be coming up, it isn't today, but coming. 

On another another note... (copied from his facebook page

https://www.facebook.com/groups/1579362122354190/permalink/1614047012219034/?comment_id=1614062268884175&notif_t=group_comment&notif_id=1465521088722709  )

Sol had his well child check up today. He is now 15lbs 13oz and in the 25% on weight! This the kid they told me would never hit the charts on his weight gain. His height has always been measured from head to rump so they cant get an exact on his length, but for consistently measuring that way he has grown 2 more inches (thats just head to rump!) He is looking good, he does have a butt rash that has been going on for awhile, we found out he cant tolerate the type of cream we have been using :( He also has a little ouchie on his ear that we got looked at. Everything else is going well with his overall health. He did get shots, along with his big sister and they are now both pretty tuckered out. 
Tomorrow we head to madison for another doctor appointment. He is scheduled to have his trach up-sized, we will see what happens.
Another big day of traveling for him, I am hoping it will go well. I am also hoping the up-sizing the trach will be a good thing. If he didn't need the trach for a long term time frame, he wouldn't need to be upsized, so the fact he is getting a bigger one means trach for many more years. But it also, hopefully means, he will be able to move air better and need less suctioning. All we can do is go day by day.

Some days have been very hard and bleak, especially when we started to have to deal with his swallowing difficulties. The last few days, although, have been good. We started the summer with a bang. My niece was born on the 2nd and May and I got to see her before she was 24 hours old! Then Sol got to meet her a few days later! May has been having friends over, and yesterday we went to the zoo with one of her friends. It was a great day for everyone and it was a ton of fun! I am appreciative to have a nurse so we can do these few things. I really wish there wasn't a need for Sol to have a nurse every day, but at least we are going forward. The best thing is how strong Sol is getting. Recently he has been sticking out his tongue a lot, his legs are kicking like crazy and he LOVES to be on his gym. Every day we are doing it now just because he loves it so much. His neck is getting stronger, he also moved his pinkie this last week, and he has been making noise over his trach too. It really gives me hope for all the things that could possibly come. I hope he is able to pick an apple from our apple tree some day! 

the hammock.

Babies with arthrogryposis multiplex congenita develop this due to the lack of movement in utero. There are many reasons why there is the lack of movement, if it be that the muscle didn't form which leads to no movement, some cases there isn't enough fluid for baby to move, I've read that sometimes the cord can cause contractures as well. Each child has a different reason as to why they didn't move. We know our babies didn't move because they lack skeletal muscle to give them the strength to move. As they get/got bigger they can take the muscle they have to work with and make that as strong as they can and work with what they have. I never saw any movement from Lua's core, trunk area. I was told at the hospital that it seemed she lacked all muscle in her back, so I was never sure if she would or wouldn't ever move her trunk area. I tried to work with her on that, but it is hard to try to activate those muscles in that area and notice movement from a weak baby. The most we did to work with her was sitting up, sitting up against pillows, or holding her in sitting up position and she did well with all of that. We did tub time where she could move her little body, but because of the trach we never filled the water up too much to protect her from water coming in. I had plans to take her to an aquatic center which would have been easier to hold her in and what not, but we never made it there. So I was never aware of any progress that we made with her core. Sol was pretty much the same. I never saw movement from his trunk, I'm not sure how much muscle he has there, we are continuously told by the speech therapist that he wont get better at his swallowing unless his core gets stronger. I was trying to think of what we could do so he could try to activate his core. He doesn't tolerate sitting up well unless I am holding him up. He aspirates too much saliva to get a good work out from sitting up assisted with pillows and what not. His swing as too much support to actually have him activate those muscles in my opinion. The tub is the same with Lua, we can't fill it enough to really help him be free in that area and it be safe. I was trying to figure out what we could do so he could lay free and feel his whole body move but also be contained in something that was somewhat supportive. The hammock came to mind. I thought about this for awhile and it sounded like a good idea. So I took a blanket and tied to two chairs and safely held him in there. It swings, he feels all of it, he LOVED it. I went on amazon and bought a baby hammock. 

Best. Buy. Ever. 

It is exactly what I was looking for. When we got the hammock and put him in there, the first few seconds I saw his trunk area do a little shimmy, shake, shake. He loves it. He smiles, He swings. He is free yet supported and I think this will help activate the rest of his body that we can't quite activate for him. I highly, Highly, recommend a baby hammock for any kiddo that has weak trunk area. I actually recommend a baby hammock for any baby! They are awesome, it is kind of like a sling that you would use to wear a baby but you lay it out and let the baby swing by themselves. I am so happy I thought of this idea. He has gone in it a little each day. The first few times he was in it, he was so happy and he didn't require a ton of suctioning, his oxygen level was 100% and his heart rate was 120s, which is lower than his normal of 140s. He was just so content and relaxed in it. If nothing else it is a great thing to let the babies relax on.

Recently Sol has also started to bob holding his head up. He can some what support his head if we sit holding him upright and balance his head. The longest he has held up his head is about a minute. Small amount, small start, but great progress!!! I just keep thinking where he will be in 5 months from now. Hard to say, as long as he continues to improve that is my ultimate goal. He has been feeling pretty well lately too. This weekend we went to see his new baby cousin! And he had a great day. Very little suctioning required, he did great on the car drive, there and back. He had just the best day we have had in a very long time! It has taken us all week to recover from that, but thats okay. We have another trip we are going to make, to madision, on friday and hopefully he does just as well for that trip. I am so proud of him and all the strides he is making. He is one tough little man.

He has also been working on his little gym and his leg movements are going wild! Another thing he absolutely loves! When we had Lua, I strapped balls to her legs to let her move, and she could move like crazy doing that, and she loved it! I didn't see this type of gym, that is actually for SMA kiddos, until we were at the hospital in Madison. This is another must have for kiddos with low muscle tone, contractures, and that are weak. It really helps them to feel free.

There are so many tricks out there to help babies like ours get movement in, and the great thing about all of these things is the fact that the more they work at it, the stronger they potentially can get. The stronger they get, better quality of life they can have. It is one of the things I enjoy through all of this, trying to find new, unique ways to get them to move like we do. I just love to want him and see how happy he gets getting in his hammock, or how much he enjoys kicking his legs around. He gives the biggest smiles. It really is the best feeling in the world. Someone told me once, or I read somewhere, that is the thing about having kids that are different able, it means so much more when they hit mile stones, it is a much bigger deal when they accomplish a new task or experience a new thing. I almost cried when I felt Sol take his head away from my hand and hold his head up on his own.
Those are the moments you live for.

new world

I have known this for awhile, but I think I am finally being able to accept that I live in a different world than most people do. I experience things some people will never ever experience, and they wouldn't want to either. It is one thing to live in a world where you are apart of a group who has had a special needs baby, I could go on to be specific and say an AMC baby. But then we joined the group of those who have lost a child. Then we joined the group where we had a special needs baby, lost a child, and had another special needs baby. If you look at that percentage wise, including the death of our daughter, that is a smaller number of people who live and experience those types of things. I know others are out there, but it is slimmer than just having a special needs child or just having a child that passed away. For some reason, today, I looked at it and said "Yep, I live in a different world than most people. Some days I'm okay with that, other days are terribly lonely, but today I feel okay with it. I can't even describe how hard it is for me to see facebook posts of perfect little families, or pictures of women who are pregnant and will have perfect little babies, that can be hard, that can be very very hard. I know I have said all of this before, but it is one of the main things I struggle with, the jealously of what seems to be other peoples perfect lives and how come I wasn't blessed to get that. I try extremely hard to push those feelings aside because I know they don't help anyone, but they are there none the less and I'd be lying if I said everything was perfect.
This holiday was a little depressing, for example. Seeing everyone going out and being on a lake or going camping, or going to the park or a parade, we can't do any of that right now. We tried to go to the furniture store in plover, a 30min drive, and it was misery! Suctioning and suctioning and so stressful, at this moment we are living in a very difficult world. We can't do things as a whole family like everyone else can. I can't take my baby with me wherever I go, we can't do vacations easily, and it is depressing. I think we still ended up having an okay weekend though. Our neighbor came over one day and had dinner with us and brought us an amazing dessert. She visited for awhile and even folded my laundry for me. The next day we spent some good outside time, all of us, the first time we all did that as a family and that did feel pretty good.
 I read something the other day, although, that made me feel a little less bad about Sol's condition. When I was reading some information about congenital myopathies, it said, kids with myopathies don't hit milestones as fast as normal. That sounds depressing right? When I read that though I thought, do they ever hit milestones??? Will he Ever hit any milestones? For sure not like normal babies. But there is a reason it is worded like that, because babies with these conditions CAN hit milestones and yes it may take Years, but hitting them none the less is progress. That makes me think if we work hard enough he could hit those mile stonessome day maybe. We still don't know how much muscle he has, so what type of milestones he will reach I won't know until they are here. I'd rather read they reach milestones later than typical babies than read they wont hit them at all, even if he doesn't ever hit them because saying it that way gives me hope.

My fear at this point will always be, what if/when will I lose him. How will I possibly be able to ever live in that new world, being the person who has lost 2 kids. I know it isn't for sure he will pass away, I know though because of his condition his life span is shorter than most. Again, I feel like I am writing the same things over and over, but these are the words that run through my head daily.

Ok enough of that lame complaining stuff... Some updates.

We have nursing, I went with the nurse that wanted more hours and it is working out well. Today I had that moment that made me feel so glad I do have nursing. I got to take May to school. I got to chat a little with her friends instead of rushing out as soon as possible to get back to Sol, and I was able to go to the cafe and have some coffee with Thiago. It felt great to get out on this super nice day! And know that Sol was fine. He has actually just recently, like this week, almost fully recovered from being sick. Yeah a cold that I had for a month, kept him really down for what felt like a month and a half. Plus I think we had teething happening here as well. When this all took place Sol stopped swallowing and became crazy with the amount of suctioning, and still is, but today has been just a tad better and we have been hearing him swallowing, so maybe he is getting back on track now.
He has recently been starting to coo while on the vent. He does this almost every night now! And we can hear him cry now as well instead of just going by heart rate! Which is nice, I can hear him cry before the alarm and can get to him sooner. It is also just the best thing in the world to hear your baby! He has also started making a little noise even while being off the vent, they are small sounds but it is a great start! Birth to three has been coming out for about a month now, and I think that is going well. We are working on more things we can do with his mouth to get him to get into that swallowing more and also working on his feet and legs before we end up doing any casting and surgery. Friday we go to madison for another follow up appointment.. I think this is the first week since we've been home that I didn't call them for anything, so they are probably wondering whats going on with us.. haha, well we will see how that goes.

I wish I could write better, deeper, or a way that is more understandable? But I get interrupted frequently and then I get out of the mood to finish what I am writing which is why it is hard to update often. Oh well, any update is better than none :) 

damage

The last couple of nights have been going very well for Sol. No oxygen dips overnight! Which means no waking up 6 times a night for us! He has still done a few dips during the day during his naps, but I'm wondering if it is the increase of saliva that is causing him to pause breathing or something, but, thankfully he has gotten so much better. So much better that last night I got to sleep from 11pm to 4am! IT was amazing!!! I feel like a real person again!!! Woo hoo! And yesterday he had a lot less suctioning than what he had previously. Although it was still a lot... it was less, and he needed no suctioning at night.

Last week we started nursing at the house. I started with a few days for 4 hours. With Lua I had nursing full time and it just became to overwhelming for me. I didn't have any nurse I really clicked with so that is one problem, but I felt too much anxiety of having to be in the house with someone all day, feeling obligated to entertain them, and if I wasn't entertaining them then I needed to find something for them to do so they didn't just sit around and do nothing, but the last nurse I had, wasn't really enthused about keeping busy. That is why I wanted to start off slow and just get the hours I really needed them. I don't have a lot of things to do out of the home all the time, and I don't really want to spend 8 hours a day away from Sol... just a weird thing I have going on I suppose. I'm too jealous of nurses with my babies, I want so badly to have a normal baby at home that it is weird to have a nurse come in and take care of your child. Last week the schedule worked really well for me and the nurse we have was GREAT! but the company had a nurse they wanted for us that was already working with a baby that had a trach and gtube. At the time she left the company for a full time job, but I got a call last week that, I guess that fell through, because now she wants to work with us but the stipulation is she wants full time. She is coming today, soon here, and we will see how things work out. I'm not sold that I want full time nursing still. I can't have more anxiety than I already have going on! So we will see what happens today. Maybe if she is an amazing nurse we will just work with it. I don't know. we will see.

On another note. Sometimes I go along life and think that there wasn't any permanent damage done by losing Lua. There are moments that suck, moments that I wish her to be back, that I can't believe she is gone, but I usually think that is it. We miss her, long for her back, and that is that. I was watching call the midwife yesterday, and they did this episode about a mother that has a baby die at birth from being severely deformed. In the season finale of the show, they go back to that mother and she is just a mess. Being away from home because she can't handle her kids, and she says how she just wanted that baby girl so bad. That hit home hard! It made me realize that although I think we miss her and that is the most of it, every time I lose it is probably related to the permanent damage done to losing our child. I already had a low tolerance for things before having kids, then having kids that gets lower... then losing your child, I can hardly tolerate things anymore at all! I feel bad all the time May drives me crazy. I am that person who knows better than anyone you should cherish your children because you never know about tomorrow, but sometimes I can't take it! Now I see that it maybe isn't because I'm a bad mom, I'm just damaged from losing my child and that sneaks out from time to time on me. It is all just crazy what happens after you lose a child. 

can't.

The last few days haven't been going so well. Sol has started this new thing where he will dip his oxygen levels down to 88 and then bounce back up, but he does this a few times in a row and suctioning isn't the reason behind it. He also is sitting lower at night for oxygen than his normal as well. No clue what is going on or why. I've called the docs a few times over the last few days, one doctor order a chest xray which we did earlier today. Haven't heard the results back on that yet.

This has all been very stressful, it doesn't help that since he is dipping his oxygen we are waking up many times over night to check on him, we are back to the no sleeping thing again. Ugh. When you get little sleep, everything seems much worse as well. The upside, I finally worked things out with a nursing agency and we had a nurse come out today and will have one again tomorrow and thursday so this week will be the week of training nurses and hopefully this will help with a few things.

One huge problem we are having is the fact that he has soooo much saliva, soooo so so much going on in his mouth. I'm not certain he is teething but I'm leaning towards the fact that he is? The other night when this all started he wanted to suck very badly, making loud smacks and sucking motion. His heart rate was up, and he looked uncomfortable and wasn't going to sleep, and this was at 1am. I did end up giving him a tiny amount of Tylenol because I was out of ideas of what to do for him. After he got that though, he did end up going right to sleep and looked a lot better. I can't say I'm certain he is teething, but he has a ton of drool going on either way. He ended up throwing up for the first time because of all the spit in his mouth.. he started gagging on it and ended up spitting up a ton of saliva. I feel so bad for him, he just isn't able to tolerate all of the secretions going on in his mouth, so I called to see if we could try these drops that dry up his mouth some and see if that would help. We got the drops yesterday and we did one dose, but then today I did 3 doses and the last dose had results. His mouth did dry up, he didn't need much suctioning at all, but his heart rate was higher than normal and he started to get way too thick with his secretions in his trach and I don't want to have to deal with plugs, so I don't think I'm going to do the drops again, not right now, not until we figure everything else out. I just don't know what is going on and that is so hard, the unknown, the fear of what will happen over night. Will we lose him all of a sudden, or is this not as big of a deal as I feel like it is?! I don't know and I am losing my mind. I feel I just cannot do this, I am so not made for this, and having the loss of Lua hanging over my head, makes all of this even worse. I can't do it again, I don't know what would help, but I wish there was something. Maybe tonight will go better, maybe the doctors will have some ideas for us tomorrow, maybe, maybe, maybe....? 

sick days

It has been about 11 days since Sol got his first sickness. We have had some scary days, some hard days, sleepless nights, and a lot of suctioning going on. I've had some bad flash backs to when Lua was sick and hoping we don't end up in the same situation we did with her, but this time has been different. I don't want to think we are out of the clear yet because when I thought we were over everything with Lua she then quickly passed away. We did end up making a trip to the doctors in Madison this last week, but that appointment was already scheduled as a review of how he was doing on his new feeding plan. But we were still able to have some doctors look at him and the day we went he was looking fairly well, still battling his cold but managing it pretty well. After we got home he started the congestion stage, which for me has been a lot harder to maintain than when he first got it and was spewing out secretions. With congestion the crud sits on his chest and it is so hard to get out, when it sits in there his oxygen levels go down and that is never good.

The first night that he got sick, we knew he was sick because he suddenly started needing constant suctioning, and after a few hours of us having to stand next to his crib suctioning, I decided to call the hospital to see what they recommended. I was able to talk to a pulmonary doctor that we had a few times in the NICU. She sent us an antibiotic right away and worked out a continuous feed plan, along with extra coughs and chest p/t to help work it all out. The first day was pretty rough, we spent the whole day and night on the couch trying to maintain him. By that evening he was already looking better, the secretion amount stayed about the same for the next few days. Then we ran into this congestion phase and besides being already tired from staying up half the nights suctioning, now we had to stay up most of the night to try to stay ahead of the junk settling into his lungs. By that morning I was starting to not be able to keep it together anymore and strongly considered admitting him to the hospital. He was keeping his oxygen right around 93 and the doctors said if he stayed at 92 he would need to be seen right away, I didn't want to wait until he gets stuck at 92 before we try to make it to the hospital that is 2 hours away. By the time I heard back from the doctors, we spent all day doing cough assist and saline nebs, he finally started looking a bit better. His main doctor ended up calling me and talking me through how to change his vent and give him a little bit stronger settings and also made his cough assist a little stronger as well. She ordered up some nebs treatments for us as well.

Almost as soon as we did those changes I could see a difference in Sol. His oxygen went to the 98s and stayed there and the coughs were getting all the secretions out on the first set of coughs. It was nice the doctor called and talked to me for some time trying to figure everything out. She reassured me that if I felt too overwhelmed she had no problem admitting him to the hospital. It is easier to take care of him when you have another set of hands, though, and Thiago was about to get home at any time so I told her we would see how Thiago felt and if we were too overwhelmed we would head down there. I just didn't know if we would even make it because both Thiago and I only had about 3 hours of sleep that night, neither of us would have been able to make the drive, and Sol would have required a lot of work to sit in that car seat for 2 hours that I just wasn't sure if I could do. The plan was if he didn't get better by morning we would head there. He was improving though, and for Friday I called some reinforcements to come in and give me an extra hand with things, my mom! Since our nurse has canceled on us again for the 5th week in a row, I needed someone that I could count on.

So today... Sol has been doing about the same. He is responding will to the new vent changes and other changes we have made, he is a tad bit less congested, he still has a ton of secretions but some of this may be coming from teething. He has little white bud sticking out on his gums so I'm thinking we got a cold and teething at the same time, who knows. We were told this virus could last 10 to 14 days, so hopefully we are almost done with this sickness.

I am so thankful for the new doctors we have and the hospital we went to this time. He probably wouldn't have handled this cold as well if we didn't have the support we have from them, he would probably be in the hospital right away other wise, or it could have been even worse. I'm really hoping we are on the upswing, but I know how fast things can change so I'm not letting my guard down, and keep hoping that he clears this cold fully.

He has accomplished a few things while being sick, though. This week I noticed his wrist was moving like a waving motion, so i propped his hand up and sure enough he can now pull his wrist forward enough to make it fall down. This morning he was working at pulling his hand to his mouth! His thumb is getting much stronger as well! The other day I caught him looking at his thumb while he was moving it. He is such a silly baby! He has been such a trooper through this all and has kept up his smiling and happy baby faces even through the thick of it. That makes this a lot easier when you have gotten no sleep and scared to death of what will happen and he flashes you one of his adorable smiles! Makes it all worth it for sure.
I find it funny how excited I get with the tiniest things sol does, these are things normal babies do with ease, but his little movements like this, are amazing to me! So many parents never even consider what life would be like if their child couldn't bring their hand to their mouth to suck on it, so when i post a video or a post about what he is accomplishing I don't think many people understand what a big thing this is, unless you have lived it, me saying Sol moved his wrist a tiny centimeter kind of a sounds like a joke. I wish everyone could feel the same excitement I do when these things happen. As long as he keeps working at getting stronger.

In other news... Lua is with another angel in heaven tonight. My heart is heavy this evening for my cousin who lost his daughter this morning. I know, somewhat, the pain they are feeling this evening as they go to sleep the first time without their child.
I wish this would end, losing the people we love. It seems to just get harder and harder every time another person leaves us. Pain, pain, go away!

Sweet baby feeling miserable... 

Sleepy baby. 

 Sick but feeling much better.